"Identifiying the lost generation of adults with autism" (Baron-Cohen & Lai) is outrageously misleading.

This review by Dr Meng-Chuan Lai
and Dr Simon Baron-Cohen (SBC) should be retracted for being outrageously misleading. It starts with an assertion of a highly dubious
massively important controversial “fact” with no citation whatsoever in
support.

The opening sentence (of both
abstract and text) asserts to us that as of 2014-15, 1% of 10-year-olds are
autistic, and 1% of 30-year-olds are autistic, 1% of 50-year-olds are autistic,
and so on, for “all ages”.And the
title of the paper reinforces that untruth with the notion that there is
therefore a “lost generation” of older autistics who have mostly remained
unrecognised as autistic and thus “lost”.The un-explicated implication being that there has not been any increase
of autism but instead only an increase of awareness or diagnosis.And this paper sets out from its beginning
by grossly misleading the reader into assuming that that is known to be a fact,
indeed established to such an extent it doesn’t even need any citation in
support.

And that title and first sentence
are not incidental to the paper but are its central premises.

I sent emails to the authors,
querying the justification for that first sentence.I got no reply from SBC.

Dr Lai sent a series of
replies.The full correspondence is too
lengthy to include here in full, but here are some main excerpts.

Dear Robin,

Thank you for your message. For clarification, when we write
“Autism spectrum conditions (panel 1) comprise a set of neurodevelopmental
syndromes with a population prevalence of 1% across all ages.” we are NOT
referring the term “ages” to different chronological years (i.e., 1970s, 80s,
90s, etc.) but are referring it to the ages of the individuals; that is, we are
referring to epidemiological evidences that recent cross-sectional studies in
children, in teenagers and in adults all tend to show a prevalence around 1%
(depending on studies but can range from around ~0.5% to ~2%). We, therefore,
have no intention to argue in the paper whether the prevalence of autism is
constant or not across different chronological years.

Hope this clarifies the question/mis-understanding.

Regards,

Meng-Chuan

Dear Meng-Chuan,

Thanks for your reply. Unfortunately it appears
to me to be completely bonkers. Your phrase “all ages” includes obviously
those who are 40 or 60 years old. And even older. As of 2015, a
person who is age 40 was necessarily born in 1975 or earlier, and a person of
age 60 was necessarily born in 1955 or earlier. That is, such ages of
persons are impossible to disentangle from the huge change of apparent
incidence (per birth-year cohorts) which is the basis of the notion of the
autism increase. I fail to see any way you can separate ages (of “all
ages”) from specific years of birth.

In response to my request for any evidence to support
that claim of your first sentence, you didn't send any, but instead included a
sentence contradicting it. And that notion of “1% across all ages” is
fundamental to the point of your entire article, namely the notion of a “lost
generation” of older autistics.

(If I may do a bit of your homework for you here,
perhaps the cited Brugha et al. could be supposed to constitute supporting
evidence on the matter. But Brugha et al. is fundamentally unsound.
They went to great lengths for establishing reliability of the
assessments. But no establishing of the (infinitely more important) validity
of the assessments, that is establishing that the measures at age x were
equivalent to the measures at age y. And that is because it is
logically impossible to do that validity verification (except maybe over many
years). It's a bit like if I put a steel ruler in a hot fire and declared
that I can see that its own scale shows it to be still exactly 12 inches
long, so “therefore” the heating hasn't changed its length. For this
reason Brugha's (and any similar studies) amounts to no evidence whatsoever for
countering the evidence of Hertz-Picciotto and others.)

But your present article is simply unacceptable
(seriously misleading) and has to be retracted.

Sincerely, Robin P Clarke

Dear Robin,

Thank you for the opportunity for further clarification. If
I understand your points correctly, the main critique is based on your
perception: "that notion of "1% across all ages" is
fundamental to the point of your entire article, namely the notion of a
"lost generation" of older autistics".

I am sorry if this is how you perceive our arguments.
However, this is not what we have in mind when we wrote it. You are right that
the paper mainly discusses under-recognized autism in adults - indeed the sole
focus of the review, and from a clinical perspective. We are asked by the
journal to provide general epidemiological background (based on published
studies), and this is where the ~1% number comes from - and we provided the
number in adults, referencing the Brugha paper which is one of the few
published study focusing on adults. We DO NOT mean to argue "there
is a constant 1% prevalence over the years so there is a lost generation".
We simply refer to the current epidemiological findings that adult prevalence
at the time being is also around 1%, and many of them have not been diagnosed
in the past. I agree it is difficult to get the ground truth (due to
issues with validity of diagnosis, changes of diagnostic concepts [that we have
discussed in the review], and not knowing whether there is true incidence
change); the prevalence number cited here is simply giving a general picture to
the readers, from available published epidemiological data.

It is possible that there is increased incidence over the
years, but this does not contradict the possibility of people being
under-recognized as a child. We focus on the latter and have no intention to
discuss (either support or refute) the former.

I hope this helps clarify where this review comes from.

Regards,

Meng-Chuan

Still not having heard anything from SBC himself, on 9th
January I posted a letter to him by Signed-For-Delivery (KP597377771GB at
royalmail.com) as follows.

Dear Dr Baron-Cohen,

I am writing here in
respect of your article "Identifying the lost generation of adults
with autism spectrum" in Lancet Psychiatry 2015.

I am concerned that I
have not yet heard from you about this article.I hope you are not unwell.

I will send herewith
a copy of my correspondence with your co-author Meng-Chuan Lai.His replies get even more absurd and
indefensible than the original article (indeed raising doubt about his sanity).This matter of the huge tragedy of the
manyfold increase of autism is very serious.Publishing of sloppy, wantonly misleading writing about it is completely
unacceptable and unethical.It is all
the more unacceptable that you yourself put your name to such a grossly
misleading and unworthy document, given that you are widely trusted as “the
leading expert” on autism.And further
that this is the very opening of a “review” being published in the Lancet no
less, thus likely to be “authoritatively” parrotted by future generations ofstudents as supposed established knowledge.

I included two of
your email addresses in my correspondence with Meng-Chuan (sb205@cam and
editorial@molecular)but have not
heard any comment from yourself on the matter.I do not know whether you are aware or not of these issues (though as
co-author you should have been aware of the opening sentences of your own
article anyway).

Accordingly I am now
sending this letter by signed delivery requesting that you clarify your
position on this very important matter.Do you agree with myself and others that the article is unacceptably
misleading and must be retracted?Or
what?

I look forward to
hearing from you as soon as practical.You have one of my email addresses at the top here, and another is
rpclarke@autism.

Sincerely, Robin P
Clarke

I have still not received any reply to this letter, by
email, post or any other means.Why
not?

“I have
only two questions for you:
1. [....]
2. [....] I'd like you to show us the 30, 50, and 70 year old
adults who display the same symptoms of classic autism that we see in
children, the non-verbal adults in diapers, banging holes in walls and spinning
in circles. [...]”

The reply from SBC went on quite a bit, but did not give the
slightest answer to those questions.Again, why not?

And this hugely misleading from SBC comes in a context of
his twice blocking my own evidence about the increase.When I sent to his Molecular Autism journal
my epidemics paper, he replied with an assertion that “The advice we have
received is that the methodology would not get through critical peer review
from our journal”.And yet this is a
pseudo-reason, because it is the editors themselves (i.e. himself) who choose
the peer reviewers and thereafter decide whether or not the peer reviewers have
shown the paper to be inadequate or not.

And a second occurrence of blocking by SBC occurred when I
sent to his journal my paper about road traffic pollution as a supposed cause
of autism.He refused to publish it
unless I cut out all mention of my alternative explanation (in terms of reduced
ventilation of the mercury vapour emitting from non-gamma-2 dental amalgams).

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